St. Louis Conference

Invitation from Amy Williams, Co-Chair Missouri

Go to Registration Page Here!

Have you ever had the feeling of being in this battle alone, wanted someone to talk to, hug and share experiences with who truly “gets it”? Well, your desires can become a reality in June. Consider joining us June 19, 2010, in St. Louis for a Patient/Provider meeting from 8:30 am-5:30pm!!

This meeting will allow you the opportunity to meet other VHL patients and their families.  You will also have the opportunity to hear some wonderful speakers as they address VHL issues.

The conference registration includes the meeting space, handouts, group lunch, and snacks during the day. Discounts available before May 27, but we will welcome you, even at the door!  Register on the web, or on page 10.

Cardinals Baseball!

We have arranged for a block of tickets to the Cardinals Baseball game vs. Oakland on Friday evening June 18 before the conference.  Tickets are behind third base.  They are $40 apiece (regularly $45) so we can all enjoy the ballgame together and get to know one another.

Order your tickets to the game now, here!

Highlights from the agenda:

• Dr. Theresa Deshields from Barnes Hospital and Washington University will speak on dealing with the stresses and strains of living with chronic illness.
• Dr. Arun Singh from the Cleveland Clinic will speak on eye issues in VHL
• Dr. James Gnarra of the University of Pittsburgh will update us on VHL Research, and Dr. Rachel Giles of the University of Utrecht will talk about her research on VHL using zabrafish, funded in part by the VHLFA.
• Dr. Adam Kibel of Barnes Hospital and Washington University will speak on kidney issues in VHL
• Sarah Nielsen, a genetic counselor from the University of Pittsburgh, will share her research on two large VHL families in Pennsylvania that can be traced back to the 17th century.
• Dr. Ram Srinivasan of the U.S. National Institutes of Health will share with us the progress of drug development and testing for VHL and some clinical trials opening soon at NIH.
• And Amy Riter, Miss Wheelchair Ohio 2010, will  share her own VHL story and lead a Round Table discussion among the attendees in the afternoon.

We can’t wait to see you! Go to Registration Page Here!

Your conference team: Brian Martz, Doris Haarmann, Jodi Hopewell, Kate Paige, Amy Williams, and Mary Lou Linn.

As printed in the VHL Family Forum 18:2, May 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.